I have tardive dyskinesia. I’ve not written about it. I can’t find a single reference online about it that doesn’t pathologize it..and DRUG it further.
This is a very brief definition taken from WebMD (and to be clear they do not know what it is)…but the description is fair enough.
Tardive dyskinesia is a side effect of antipsychotic medications. These drugs are used to treat schizophrenia and other mental health disorders. TD causes stiff, jerky movements of your face and body that you can’t control. You might blink your eyes, stick out your tongue, or wave your arms without meaning to do so.
I’m not going to say much now except that in my experience it is, in fact, a heinous and difficult condition to live with. It’s also an infection. It’s the body attempting to DETOX from the poisoning it’s been subjected to. It works to help clear the body of infection (lyme disease and other hard to treat biofilm based micro-organism imbalances) and pharmaceuticals which sometimes go hand in hand. I have surrendered to it and it’s been an incredible ride of astonishing transformative healing as well as a source of insight in and of itself.
I am posting this only because there isn’t any understanding of what it is anywhere from what I’ve seen. And absolutely no one outside of conventional circles speaks of it at all. I’m hoping that we might change that or you might tell me what I’ve missed. We need one another to heal from it as well. It takes on a life of it’s own and is insanely challenging. I don’t know a single soul with it. Most people who develop it are lost to psychiatry in the worst way and generally silenced because of it. I knew people with it when I was a social worker in the system with folks who’d been completely marginalized and we’re no longer part of normal society.
If you have a unique understanding of tardive dyskinesia and have lived with it, I’d like to hear from you. We can keep the conversation private if you wish. When you leave a comment it’s not automatically posted so just request that it stay private if you want that.
Please share this post in mental health forums too if you are members of such places. I’m not.
I may not get back to comments immediately. I may choose to take it to email instead of the comment section as well. I am honoring my personal life now and so working with this site differently.
thank you.
(Please no advice. Share your personal experience only while understanding we are all unique even if some manifestations in our experience are similar. We never know what someone else might need. This is about mutual data collection and support…)
I took this post down for 24 hours after getting annoying comments by people who thought they know what was up with me and failed to talk about their experience rather than tell me about mine. I don’t tolerate that sort of response. That is how doctors treated us…I won’t allow it on my site. I’ve turned off comments now. I don’t need what I thought I needed when I posted this anymore…and still perhaps others would like to know that this is, indeed, something that happens to a lot of people… I haven’t put any details about my own experience because it’s personal and I only post what feels appropriate at any time. I don’t give details about myself most of the time…it seems that sometimes means people assume all sorts of stuff I haven’t said. I can’t control that. And so, it’s really not appropriate to tell anyone what is up with anyone other than ourselves…please remember that as we learn to better support one another.
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I would like to know if others experienced tardive dyskinisia thought there was a connection between TD and akathisia. Can one experience both simultaneously? My daughter was forcibly drugged with neuroleptics for nearly a decade while being shuttled back and forth between state hospitals, group homes, and other restricted facilities.
Today, she can’t stop talking. She has a sore throat from talking from sun up till sun down. I looked this up and there is a condition called logorrhea. Can this be a form of akathisia? Even though movement disorders typically refer to big muscle movements, what about speech
Reblogged this on The Thrill is Gone… Sexual Dysfunction from Psychiatric Drugs and commented:
When I was a Psych major in college we were told these drugs were wonderful at controlling the symptoms of “mental illness”. We were NEVER told about the horrible side effects. Therefore, later, when I worked in hospitals and halfway houses, I thought that tardive dyskinesia was just another symptom of the “disease”.
It wasn’t until much later, when I found out about it through my research on a computer, that I realized it was the result of brain damage caused by these drugs. Sadly, I saw it in one of my relatives who had been on neuroleptics for many years.
When I was a Psych major in college we were told these drugs were wonderful at controlling the symptoms of “mental illness”. We were NEVER told about the horrible side effects. Therefore, later, when I worked in hospitals and halfway houses, I thought that tardive dyskinesia was just another symptom of the “disease”.
It wasn’t until much later, when I found out about it through my research on a computer, that I realized it was the result of brain damage caused by these drugs. Sadly, I saw it in one of my relatives who had been on neuroleptics for many years.
yes…in my experience it’s a response from the body to the damage. the damage is radical so this response is too.
Dearest Monica,
I have not yet read your writing on TD . . . just the title put me into a rage. I have lived the HELL of Tardive Dyskinesia since (exactly) early May of 2008! After f_cking years of Seroquel that ate the myelin sheath around my nerves so I looked like I had Parkinson’s in my face, jaw and neck. F_CK them! And the neurologist was on the “scientific board” of 11 different pharmaceutical companies as he happily stabbed me with Botox for 5 years, killing more nerves to stop the jiggle jiggle yes yes throat clutch face clench to swallow. The straw that broke my entire wiring was Systemic Cobalt Poisoning from failed hip replacements. Ground bits of arsenic-like cobalt swilled through this body for 4 years, leaving me chronically ill and eating more myelin like crazy, not to mention bone, flesh and heart . . . I’m a used piece of garbage to them, but I’m good for billing Medicare with their expensive tests. “O what could it be?” Duh. 5 years of toxic levels of cobalt in my blood after 4 hip replacements in 4 years. Seroquel and cobalt . . . voracious demons leaving necrosis . . . dead flesh and bone that looks like crankcase oil. What a cocktail! (Sorry to be off subject. TD comes raging forward at 3:30am every morning . . . the time of a cortisol surge in the metabolism . . . I have had everything and person and dime taken from me. I’ll go be still and will be back. You are unrelenting, woman. What a mentor!
mickey
I’m so sorry Mickey.
Thank you, Monica. And thank you for bringing the issue to the foreground! My neurologist kept calling my condition by different names “functional movement disorder”, etc., until the Seroquel statute of limitations ran out, and he diagnosed me as having TD. He made $194,000 that year in payouts from all his drug companies in which he was a “scientific consultant”. See DollarsforDocs to see who’s on the take. I am entrenched is one of the biggest most disgusting scams that is destroying tens of thousands each year as docs circle the wagons and protect each others’ lies.HIP REPLACEMENTS! The biggest money-maker in the industry. And being poisoned by cobalt is the end of any career or activity I once had. I’m a total invalid. Can’t drive because of 24/7 vertigo. Trump took away my $194/mo food stamps, then dropped me from Medicaid. Sorry to whine, but people need to know of these corporate scams that are killing people quietly. Seroquel is handed out profusely in nursing homes because it “dumbs you down” . . . the easier to control you. Thanks for making this public! You have a huge, well-deserved audience for all the work you’ve done to help us.
love,
mickey
Monica,
I’m sorry if I opened a can of worms! I did not intend to cause further grief. We’ve all got enough.
Here is a good link to bcaas and TD.
https://pubmed.ncbi.nlm.nih.gov/12777270/
thanks. I’ve done pubmed searches…they don’t understand much of anything. I need people who live and work with it and are transforming it. If you have circles with such people please share the site. thank you. sometimes a treatment such as this can most certainly be part of the process…I just want to find people who understand it as detox or some other personalized understanding as we can come at the same thing from different aspects when we deal with the body holistically. I’ve found one person as a result of this article. Hopefully more to follow. Oh, and to be clear, I rarely tolerate supplements of any kind. Herbs are good. Isolates not so good. Which is why I am not looking for advice but for people with TD who see it as detox or something similar. I want insight so that we can help the many 1000s who are completely disabled by it.
Look into bcaas. Branched chain amino acids. I had it but now it is gone. Won’t say it was the bcaas but worth looking into. I learned about them from a food based psych. Good luck.
thanks… I was on the offending drugs for decades…I’m learning stuff to help those lost to psychiatry…doctors don’t help. I had the most enlightened shrink I know (I’ve interacted with 100s now) he couldn’t help but did respect my process. What I’m learning is outside medical science at this point…I want to get it out there though. thanks again.
oh, the surrender process has been phenomenal…the body says when to pursue whatever I pursue and it’s been as beautiful as it has been ugly. paradoxical living !! 🙂